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Getting In The Spirit

From Kate:

Reflecting quickly on last year, we had just kind of settled in after Getty’s G-Tube and Nissen surgery. We were trying to get a routine established, which, as any family would know, changes all the time. Changes for us are a little different. We needed routine on how to feed, at what rate to set the feeding pump, how to care and clean the g-tube and the skin surrounding it.

We were just introduced to the bipap machine last December. Bipap helps Getty rest so she doesn’t have to do all the work of breathing by herself when she sleeps. It doesn’t breathe for her, but it helps kick in and support her if she does need help.

Along with bipap, comes a lot of nuanced knowledge that seems second nature now, but felt like another mountain of education back then. What are the proper settings? How will we know if she isn’t getting the support she needs? What about her CO2 levels? How does she eat while asleep and on bipap with all of the air swooshing into her lungs? What about skin breakdown around her face over a period of time while wearing the mask? What if she doesn’t respond well to the machine, then what? And what do all the relentless alarms mean?

Again nuanced. Overwhelming last year, part of the routine this year.

Last year we had just enough energy to buy a tree, get some lights on it and find as many owls as we could for ornaments. Some people sent us some, which was incredibly sweet. But we were stressed, overwhelmed, and still pretty unsure in this journey. But there was Getty, in usual fashion, smiling as happy as could be.

What a peanut!

So this year has already felt a lot different. We don’t feel the crazy anxiety that comes with the unknown in terms of care, machines, fighting doctors, emergency and clean protocols. Our new normal is that all of those things are normal. We are just so incredibly thankful that our sweet owl is with us today so we can have a quiet and wonderful holiday season. We can start family traditions and we can be so thankful for more time with Getty.

So in keeping with that focus of starting traditions, we have made a few. Our owl Christmas tree has become very populated with all kinds of unique owls. I was in a store the other day buying another cute owl and the lady at the counter said, “Well it is always good to have an owl on your tree for safety.” I smiled, but I was thinking. “What if I told you I have 30 owls on our tree, does that mean we are Fort Knox?”

So here are a few additions to Getty’s tree.

So many different owls, it is a lot of fun to just gaze at them. Each in its own way resembles a part of Getty’s personality. We love it.

One tradition that we started this year is the Christmas Advent Calendar. Getty was not having it at first. The routine is I carry her over to it, Mark takes out the little Santa, then Santa gives her all kinds of kisses, and then we talk about how he was in a date and then he is moving to another date. Not sure how much she was grasping the concept of numbers and sequence, but she sure did love the Santa kisses. The first few days, she just kind of looked at us like we were crazy and now that we are further into the before bed routine, she gets all excited to be escorted to Santa. 🙂 Some nights we even get giggles.

The next one, I am not sure if it will make the tradition list. But we sure had a fun time making it. First, let me show the picture of what it was supposed to look like.

Easy enough right? WRONG! They trick you into thinking this “kit” will give you the ability to replicate this winter wonderland. 🙂 So my mom (grammy), Getty, and I created our own version. 🙂 Let’s just say that our house would not pass a housing inspection.

This house was made with a lot of love. I am only sharing the front of the house, because we used all of the icing to hold this skyscraper together and to decorate it. It is still standing today, so not too bad. We added the lights. 🙂 Getty was a big help.

Getty’s partner in crime, Richie Tenenbaum needed to snuggle Getty’s neck throughout the entire process.

Getty helped with the icing for the house. We had to get it off her hands quickly though, it started to harden and so her hand was almost in concrete. 🙂

Getty helped pick out candy for the house decorations.

And after a good hour of reinforcing, decorating, tasting icing and peppermint sticks, the house was complete. Getty did an awesome job.

Tonight we tackle decorating cookies. 🙂